Hello, I’m due to start Letrozole soon.I’d be interested to hear from people who haven’t had major side effects. I know that quite a few people have had joint problems etc. Any advice very welcome. Many thanks
Nora
Nora,
I have been on Letrozole a year this August (late). My SE are as you say, joint pain, especially in the knuckles.
Pain in the feet and stiffness first thing in the morning, but improves upon movement.
These symptoms whilst uncomfortable, are not debilitating. I intend to continue Letrozole into, and beyond the five years if that is what is deemed necessary to avoid recurrence.
Symptoms are ok and I can live with it! please, don’t over worry that you won’t be able to tolerate this drug. My understanding is that most women do.
WSx
I have been on LETROZOLE for nine months. I have some joint pain but don’t need painkillers very often, I walk at least 2 to 3 miles nearly every day. Sometimes I feel tired, but don 't we all? I have not had hot flushes or other se.
i have secondaries and since starting there has been no further spread, and my bone mets are much better. The infiltration in my peritoneal area has “almost completely resolved”. So for me LETROZOLE is worth any minor ache or pain.
Hi , I have been on Letrazole for 2 years, the 1st 6 months or so o suffered some joint pain & stiffness but this was usually 1st thing in the morning, this has now all settled down and I don’t experience any problems. X
Hi, only started Letrazole in April. Joints do get stiff after sitting for a while, but once up and moving ok. do have numbness/pins and needles feeling in middle toes on both feet, which comes and goes, but was told this could have been from chemo. Also still on Herceptin, so it is difficult to know what to attribute to what! But all in all very few se’s especially when you think of the bdnefits/alternatives! No hot flushes or anything else as yet. Hope this helps, and remember we all are different and so react differently. Good luck x
Hi, only started Letrazole in April. Joints do get stiff after sitting for a while, but once up and moving ok. do have numbness/pins and needles feeling in middle toes on both feet, which comes and goes, but was told this could have been from chemo. Also still on Herceptin, so it is difficult to know what to attribute to what! But all in all very few se’s especially when you think of the bdnefits/alternatives! No hot flushes or anything else as yet. Hope this helps, and remember we all are different and so react differently. Good luck x
Many thanks ladies it’s encouraging to hear that you haven’t had major SEs. Best wishes
Nora x
Im on letrozole for 6 months following 5 years of tamoxifen … I have joint pain in the morning which gets easier on moving about so wouldnt class it as major SEs more like annoying SEs which i can put up with and 100% better than cancer 
good luck x
I have been on Letrozole for about 18 months after a few years on tamoxifen. I have had no side effect at all. However as I did have joint pain when on tamoxifen, I have been taking Glucosamine 1000mg daily ever since, I just don’t dare stopping it just in case it would flare up again. I takes a few weeks for the Glucosamine to take effect but now I am slightly stiff at times, but not debilitating.
As it has been working for me, I am happy. (Scan confirmed it today)
take care
been on it for 2 years… bit stiff in morning or when I’ve been sitting for ages, but nothing to cause problems or need painkillers. Odd hot flush too… but nothing too bad
I’ve been on Letrozole for about 9 months & have painful legs at night, during the day if I walk too much but also from sitting still for a while but I can live with this. My main problems are constant recurring cystitis or symptoms of, I take potassium citrate 3 x a day & drink about 3 litres of water daily which just about keeps it at bay but find it really pulls me down & unable to sleep a full night. Also hot sweats not just flushes as I am dripping from head to toe at times although have purchased a cold sheet to use under my bottom sheet & this helps enormously at night. My oncologist has taken me off Letrozole for two weeks now because of the cystitis & putting me on Anastrozole which I took my first time round with BC & it made my achey joints unbearable so very worried about taking it again!
Hi i have been taking tamoxifen for over 5 years but due to the hot flushes etc my onc has changed me to letrozole. Taking my first one today but really worried about the SEs being worse than tam. Has anyone taken both and if so which one is lesser of two evils! Do the hotties stop on Letrozole, and anyone lost a bit of weight.
I’ve been on Anastole for a month and haven’t noticed ANY SEs.
I’m getting worried now - when do they normally start?
Hi I’m in my second week of taking Letrozole and was very apprehensive about side effects especially weight gain. By day 2 I had really bad swelling to hands & feet & gained 5lb in 2 days. Saw GP who put me on a water tablet and sorted this out immediately. He said symptoms will settle down. I go to Slimming group each week and still continuing to lose. Other than that no other adverse effects x The one thing i was told was tell them about SE as they can offer things to hel Good Luck x
i have been on Letrozole since March this year, and have had no side effects beyond a few hot flushes in the first month or two. Noi joint pains or stiffness so far
I finished my Rads 2 weeks ago and now I am to start letrozole. This drug has been scaring me. I am having so much anxiety and now I have found out I am in osterperosis. Letrozole side effects is bone thinning.
So now they want to also put me on bisphophates. Which has its own scary side effects. I am very fit. Active and have an excellent diet. I am so worried about how these drugs will effect my quality of my life. I know they have been prescribed to keep the cancer fro recurring or spreading but my fear is so overpowering I am beside myself.
Hello giabella
Please don’t be scared of letrozole. .it’s a very efficient little daily pill that gives you a bit of back up against reoccurrence.
I have just done over 2 years on it. .hair thinning and achy joints bit very doable. .
Just remember there are thousands of ladies worldwide taking it with no problems …they only post here with problems !
Best of luck. .give it a try …it’s sometimes mind over matter !